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Talking With Readers About Owen, Disney and Autism

By Ron Suskind March 11, 2014 6:25 pmMarch 11, 2014 6:25 pm

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Owen and Ron Suskind at a school picnic in 1995.Credit From the Suskind family

In last weekend’s magazine, Ron Suskind wrote about learning to communicate with his son, Owen, who developed regressive autism at age 3, through the language of Disney. Readers were invited to submit questions to Suskind about the article, which is adapted from his coming book, “Life, Animated.” Here are his responses:

How long did it take you to find Disney movies? Was that Owen’s first deep interest, even before diagnosis? @TragicSandwich, posted to Twitter

Owen loved Disney movies before the autism expressed itself, just shy of his 3rd birthday. But it wasn’t just Disney. He loved “Thomas the Tank Engine.” He was big into the Ninja Turtles. The basic menu for kids his age. This is the stuff that cossets them in our culture. Once the autism arrived and he couldn’t draw much from human interactions, he turned to it as his lifeboat.

How did your family keep strong and sane, and how did you make sure Walt felt valued, nurtured as an individual? @grcanty, posted to Twitter

There’s a lot in the book about Walt, Owen’s older brother. Owen’s at the center of it, but a core issue is how we, the whole family, change once the autism arrives; how all the traditional things that define family were, year by year, shone through that prism. Walt, now 25, is something of an expert on the so-called sibling issues — complex issues affecting a few million folks that’s a vastly under-acknowledged area. What did we do? We did what any parents would do, with a few “more so’s.” We kind of went overboard, feeling like we’re doing more than the ordinary for Walt, but the imbalances soon became clear as Owen’s needs grew. So we brought Walt in early on discussions about Owen so that Walt knew what was up and wasn’t in the dark. We made Walt part of the team, and often he led. But mostly we tried to keep his life as “unaffected” as possible. There are plenty of rights and wrongs we recognize in all of this, looking back. We felt our way, like all parents do. But at day’s end, Walt says, “Owen was my best teacher.” And, frankly, that transaction flowed both ways. Owen watches Walt intently — really the only “neurotypical” kid he knew intimately — and listens to him like no one else. Brothers: a life-bond.

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Owen and Ron at home in 1993.Credit From the Suskind family

Did Owen ever like using the computer to communicate like Carly Fleischmann? ANNA ROINS, posted to Facebook

We never used any of the computer or augmentative communication devices with Owen. He started modest verbalizations at 5, simple sentences of a few words, and our focus was trying expand that. But we’ve known other kids who’ve used them, including the autism-spectrum child of Owen’s psychiatrist. The boy, Zack, is a year older than Owen, is bright and has a similar passion for Disney movies. At 7, he had no speech and was typing 100-plus words a minute on his device. He’s used augmentative devices since. From the mid-’90s to now, the cost of augmentative communication devices has dropped, of course, especially with the use of Apple’s iPad and its growing array of specialized apps. One thing I find interesting is how the A.S.D. kids like it for reasons beyond its functionality. Other kids have iPads. That means they can use it — rely on it — and not be so conspicuous.

I can’t help but worry about parents who don’t have the resources to spend $90,000 per year. Wouldn’t it be wonderful if every child with a disability could tap into a fund to get that level of assistance? KRISTINE, posted to nytimes.com

In a perfect world, with an optimally functioning government (some issues with that these days), we’d equitably apply the needed funds out of simple common sense: Every dollar spent early on these kids — when they are developing and opportunities are the greatest — pays off many times over in terms of lifetime costs . . . to families, government, society. But of all the money we spent, Cornelia and I are in agreement (and Owen’s therapists are, too) that the most valuable contribution was in what folks across the river, at Harvard Business School, would call “sweat equity.” That would be the countless hours committed by Cornelia, especially, since Owen’s diagnosis at 3. There are opportunity costs, for sure; she could have kept working outside the home. But the intense, round-the-clock focus on Owen and his needs — including the evenings of role-playing and those two years of home-schooling him — yielded the greatest benefits.

I was struck by the moment when you first heard Owen make an intelligent observation and were surprised to find that something was really going on in his head. Doesn’t autism only limit the expression of feelings and thoughts, not with having them? HDB, posted to nytimes.com

For many years, leading researchers, including the celebrated psychologist Bruno Bettelheim, blamed autism on “refrigerator mothers” who withheld affection. The suffering this caused to already overwhelmed moms, over decades, is unfathomable. There was nothing to it (as became irrefutably clear when the genetic basis of autism became visible in twin studies by Boston’s Margaret Bauman in the early 1980s). I think there was a lingering corollary for this period: If they can’t express emotion, they don’t have emotion. As late as 2001, a leading researcher was testifying before Congress that autistic kids were emotionless, soulless. No one buys that anymore. But some still wonder if they “want” to connect with others. Most leading researchers have come around on that, too. Twenty years ago, that was our starting point — Owen wants what everyone wants. The question was never whether. Always how.

Bruce Grierson wrote this week’s cover story about Ellen Langer, a Harvard psychologist who has conducted experiments that involve manipulating environments to turn back subjects’ perceptions of their own age.Read more…